Hello, just joined the group. I have a paralyzed diaphragm and am on O2. We do not know why it is paralyzed as it came on gradually over a year with fatigue and shortness of breath. I got pneumonia and have been on O2 ever since. My GP couldnt figure it out so went to special pulmonay doc. Did Sniff test and heard everyone in the room go....Ahh-Haa. So I figured the found out what was wrong.....the diaphragm wasnt working.

Seems the Phrenic Nerve is somehow not working One lung looks to have never worked they thought and the other is only about 35% working. May have been born with the issue.

Have some minor scoliosis with front to back bending of spine. Likely the Phrenic Nerve coming through C3-5 is messed up due to that spine bending.

Going to see Dr. Kaufmann and Dr. Cole in NJ in January. Will do complete nerve conduction and velocity study to see if they are viable.

Have been told likely candidate for phrenic nerve pacing.

For those of you that have already been to Dr. Kaufman, could you post some info on the Hotels in the area...which one etc. Ive been talking with the Dr.'s charge nurse and she has given me a couple of hotel names.

Also, I may have some folks fly up (Ill have to drive due to oxygen) - Are there any car services or vans to Hospital from the Newark airport...

Thanks, Ill be watching the thread.